Re: experience from people with IBD

[Guest guest]

Amber,

I can't answer how long you " should " be on the diet before deciding whether

or not it's working but I will say that I went on it something like 4 years ago

and didn't have many problems. Flash forward to this past summer and I had my

first *massive* flare in many years. I tried to control it with diet but it

eventually just didn't work and I had to go to the ER. A few more months later

I flared unexpectedly again (on Thanksgiving - boo!) but that time I was

actually able to fix things through my diet. So just keep in mind that just

because your body still needs to rely on meds doesn't mean that the diet won't

work for you. Sometimes the body just needs a little help In any case, I

hope you feel better soon no matter what you decide to do!

Stacey

>

> For now, it's obvious that it's the Remicade that has helped me. Knowing this,

how will I know if the diet is working for me? I know everyone is different, but

so many people I've read about say that if they start a flare, they just go back

to the intro and things get better. That didn't help me at all. I was getting

worse.

>

> I guess I'm wondering if I'm a case that can't be helped by the SCD. I

hope that's not the case, but in all honesty, how long should I really give the

diet a shot to determine if it is working? The book says a month, but I've read

other people that say give it 6 months. For those of you with IBD, what's your

experience?

>

> I know the diet doesn't work for everyone. I don't know if it will work for

me. I wonder if I'm just trying to follow it so that I feel like I have some

control over my disease. Can I get some feedback from people with IBD? Do you

think that SCD only works for those people with mild IBD?

>

> Thanks for listening,

>

> Amber

>

[Guest guest]

Amber,I would have to agree with Stacey, sometimes medication is needed to inhibit the inflammation response enough to allow healing to occur. The Remicade isn't going to heal you -- time and the diet will do that. BUT, the Remicade will buy you the time for the diet to work. Because you are putting your body through such a change in diet, it can bring about a flare or flare like symptoms because of the die-off, toxins from dead bacteria, and the like. I think falling off the wagon at Christmas may have caused additional problems because the weakened bacteria that were able to survive were actually strengthened again and will be more resilient to your renewed efforts.I would hang in there. It might take a few cycles of healing and flare/meds before the diet

alone can be used to stop a flare.AmeliaTo: BTVC-SCD Sent: Sat, January 30, 2010 3:43:46 PMSubject: experience from people with IBD

I have Crohn's, and I was diagnosed in July of '09. I went back and forth trying to get on the diet, and then finally I committed and was faithful for a month and a half before I fell off the wagon around Christmas. I am on Remicade and Methotrexate. The Remicade was every 8 weeks, but I started to come down with a serious flare much earlier than my scheduled 8 week infusion just this past month. I went to the intro diet, and actually I went to just liquids for a while to try and help with the flare and it did nothing. I finally was able to get my Remicade infusion 3 weeks early and, thankfully, it has calmed my flare.

For now, it's obvious that it's the Remicade that has helped me. Knowing this, how will I know if the diet is working for me? I know everyone is different, but so many people I've read about say that if they start a flare, they just go back to the intro and things get better. That didn't help me at all. I was getting worse.

I guess I'm wondering if I'm a case that can't be helped by the SCD. I hope that's not the case, but in all honesty, how long should I really give the diet a shot to determine if it is working? The book says a month, but I've read other people that say give it 6 months. For those of you with IBD, what's your experience?

I know the diet doesn't work for everyone. I don't know if it will work for me. I wonder if I'm just trying to follow it so that I feel like I have some control over my disease. Can I get some feedback from people with IBD? Do you think that SCD only works for those people with mild IBD?

Thanks for listening,

Amber

[Guest guest]

If I would have judged the diets effectiveness after a month I would have quit SCD long ago. To tell you the truth I could only tell that what I was eating effected me only when I ate something that caused a flare. For example, I ate cooked green beans 3 or 4 months into the diet and they caused a flare. I cut them out of my diet and the flare stopped immediately without changing medicine or anything else. Now, after about 8 months There are subtle signs that the diet has done something because I had to go on oral antibiotics which caused a huge flare. This has happened before, but this time I was able to control the flare twice as fast with the same amount of "emergency" medicine. IT almost makes dealing with flares easy in a way because I can knock them out so much easier than before. The problem with SCD is that it's very very hard to tell if it's doing anything because in order to make enough progress to feel or see the difference you have to be on it for a year. For most people anyway, some peoiple go on the diet a month and witness miraculous changes. It's all individualized. Hope this helps.-UC - 1+ yearsSCD - 7 months 100% strict and 4 months restricted diet.Asacol - 5 pills a dayFrom: fossil.color <fossil.color (AT) yahoo (DOT) com>To: BTVC-SCD Sent: Sat, January 30, 2010 3:43:46 PMSubject: experience from people with IBD

I have Crohn's, and I was diagnosed in July of '09. I went back and forth trying to get on the diet, and then finally I committed and was faithful for a month and a half before I fell off the wagon around Christmas. I am on Remicade and Methotrexate. The Remicade was every 8 weeks, but I started to come down with a serious flare much earlier than my scheduled 8 week infusion just this past month. I went to the intro diet, and actually I went to just liquids for a while to try and help with the flare and it did nothing. I finally was able to get my Remicade infusion 3 weeks early and, thankfully, it has calmed my flare.

For now, it's obvious that it's the Remicade that has helped me. Knowing this, how will I know if the diet is working for me? I know everyone is different, but so many people I've read about say that if they start a flare, they just go back to the intro and things get better. That didn't help me at all. I was getting worse.

I guess I'm wondering if I'm a case that can't be helped by the SCD. I hope that's not the case, but in all honesty, how long should I really give the diet a shot to determine if it is working? The book says a month, but I've read other people that say give it 6 months. For those of you with IBD, what's your experience?

I know the diet doesn't work for everyone. I don't know if it will work for me. I wonder if I'm just trying to follow it so that I feel like I have some control over my disease. Can I get some feedback from people with IBD? Do you think that SCD only works for those people with mild IBD?

Thanks for listening,

Amber

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[Guest guest]

If I would have judged the diets effectiveness after a month I would have quit SCD long ago. To tell you the truth I could only tell that what I was eating effected me only when I ate something that caused a flare. For example, I ate cooked green beans 3 or 4 months into the diet and they caused a flare. I cut them out of my diet and the flare stopped immediately without changing medicine or anything else. Now, after about 8 months There are subtle signs that the diet has done something because I had to go on oral antibiotics which caused a huge flare. This has happened before, but this time I was able to control the flare twice as fast with the same amount of "emergency" medicine. IT almost makes dealing with flares easy in a way because I can knock them out so much easier than before. The problem with SCD is that it's very very hard to tell if it's doing anything because in order to make enough progress to feel or see the difference you have to be on it for a y! ear. For most people anyway, some peoiple go on the diet a month and witness miraculous changes. It's all individualized. Sometimes it is not the primary but the secondary or tertiary set of symptomswhich change first. They go away so completely, and unless you are paying mind,you forget about them and forget that SCD is responsible for their disappearance.This can include all kinds of things, mental health, levels of patience, bettersleeping, no longer breaking out from gut irritation; things that you might nothave tied into your gut ailment when they first appeared, but that SCDneatly does away with. Mara

[Guest guest]

Amber,

I think some people think that SCD only works if you are not taking meds. It's

not an either or thing. You can still go on SCD while you are on the medication.

PJ

>

> I have Crohn's, and I was diagnosed in July of '09. I went back and forth

trying to get on the diet, and then finally I committed and was faithful for a

month and a half before I fell off the wagon around Christmas. I am on Remicade

and Methotrexate. The Remicade was every 8 weeks, but I started to come down

with a serious flare much earlier than my scheduled 8 week infusion just this

past month. I went to the intro diet, and actually I went to just liquids for a

while to try and help with the flare and it did nothing. I finally was able to

get my Remicade infusion 3 weeks early and, thankfully, it has calmed my flare.

>

> For now, it's obvious that it's the Remicade that has helped me. Knowing this,

how will I know if the diet is working for me? I know everyone is different, but

so many people I've read about say that if they start a flare, they just go back

to the intro and things get better. That didn't help me at all. I was getting

worse.

>

> I guess I'm wondering if I'm a case that can't be helped by the SCD. I

hope that's not the case, but in all honesty, how long should I really give the

diet a shot to determine if it is working? The book says a month, but I've read

other people that say give it 6 months. For those of you with IBD, what's your

experience?

>

> I know the diet doesn't work for everyone. I don't know if it will work for

me. I wonder if I'm just trying to follow it so that I feel like I have some

control over my disease. Can I get some feedback from people with IBD? Do you

think that SCD only works for those people with mild IBD?

>

> Thanks for listening,

>

> Amber

>

[Guest guest]

> I have Crohn's, and I was diagnosed in July of '09. I went back and forth

trying to get on the diet, and then finally I committed and was faithful for a

month and a half before I fell off the wagon around Christmas. I am on Remicade

and Methotrexate. The Remicade was every 8 weeks, but I started to come down

with a serious flare much earlier than my scheduled 8 week infusion just this

past month.

This was after falling off the wagon, right? The thing is, you managed to kill

off the easy to

kill bacteria, and then, just as the harder to kill bacteria were starting to

weaken up some,

you gave them a big feast for however long you were off, destabilizing your gut

ecology once more - so it is not surprising that a few days on liquid diet

didn't

help.

BTW, this is the reason that many of us learn that cheating isn't worth it -

because

it takes much more work to settle back down to the level we were at before

cheating.

Especially in the first 3 months - pretty much a critical time.

> I went to the intro diet, and actually I went to just liquids for a while to

try and help with the flare and it did nothing. I finally was able to get my

Remicade infusion 3 weeks early and, thankfully, it has calmed my flare.

>

> For now, it's obvious that it's the Remicade that has helped me. Knowing this,

how will I know if the diet is working for me?

If you don't always need the remicade at 6 week intervals instead of 8 weeks or

longer.

If other side effects, secondary and tertiary, that you may not even have

associated with

IBS, begin to vanish. Etc. There are lots of ways, but it will force you to be

attentive to

yourself and to think things through about your health situation.

As a long term prospect, remicade isn't so great for you. (understatement). It

lowers the

body's natural immune system. And it's pretty much the definition of treating

the symptoms

of IBS and not the illness itself.

> I know everyone is different, but so many people I've read about say that if

they start a flare, they just go back to the intro and things get better. That

didn't help me at all. I was getting worse.

>

> I guess I'm wondering if I'm a case that can't be helped by the SCD.

How was it doing before you fell off the wagon?

> I hope that's not the case, but in all honesty, how long should I really give

the diet a shot to determine if it is working? The book says a month, but I've

read other people that say give it 6 months. For those of you with IBD, what's

your experience?

You have to keep in mind, that SCD healing can be very, very slow, and

non-linear. That is,

you can experience two slow steps forward and one step back.

Mara

[Guest guest]

Amber,

my personal experience is this: people who take meds ALONG WITH lifestyle i.e. dietary changes usually heal over time, but I have never seen anyone ONLY TAKING MEDS and making no dietary, lifestyle changes get better over time. But that is just me,

To: BTVC-SCD Sent: Sat, January 30, 2010 3:55:32 PMSubject: Re: experience from people with IBD

Amber,I think some people think that SCD only works if you are not taking meds. It's not an either or thing. You can still go on SCD while you are on the medication.PJ>> I have Crohn's, and I was diagnosed in July of '09. I went back and forth trying to get on the diet, and then finally I committed and was faithful for a month and a half before I fell off the wagon around Christmas. I am on Remicade and Methotrexate. The Remicade was every 8 weeks, but I started to come down with a serious flare much earlier than my scheduled 8 week infusion just this past month. I went to the intro diet, and actually I went to just liquids for a while to try and help with the flare and it did nothing. I finally was able to get my

Remicade infusion 3 weeks early and, thankfully, it has calmed my flare.> > For now, it's obvious that it's the Remicade that has helped me. Knowing this, how will I know if the diet is working for me? I know everyone is different, but so many people I've read about say that if they start a flare, they just go back to the intro and things get better. That didn't help me at all. I was getting worse.> > I guess I'm wondering if I'm a case that can't be helped by the SCD. I hope that's not the case, but in all honesty, how long should I really give the diet a shot to determine if it is working? The book says a month, but I've read other people that say give it 6 months. For those of you with IBD, what's your experience?> > I know the diet doesn't work for everyone. I don't know if it will work for me. I wonder if I'm just trying to follow it so that I feel like I have some control over my disease. Can I get some

feedback from people with IBD? Do you think that SCD only works for those people with mild IBD?> > Thanks for listening,> > Amber>

[Guest guest]

Everyone needs reassurance sometimes, especially me! It's hardest when you're in a bad situation such as another flare ect. -UC - 1+ yearsSCD - 7 months 100% strict and 4 months restricted diet.Asacol - 5 pills a dayTo: BTVC-SCD From: fossil.color@...Date: Mon, 1 Feb 2010 15:18:14 +0000Subject: Re: experience from people with IBD

Thank you, everyone, for your responses. I realize that I am just being very impatient and unrealistic, especially since I cheated. I appreciate all your positive responses though. It's always good to hear success stories.

My original intent on starting this diet was to get off my meds, but I think I'm just going to have to adjust that goal right now and make it to reduce symptoms. I'd love if I could get off meds some day, but I think that day is way off in the future if it is even a possibility.

Sorry for the constant need of reassurance. I just need to have faith that the diet can work for me. And I need a LOT of patience. But it will all be worth it if I can help heal myself.

Thanks again, guys. You're always so helpful.

Amber

>

> I have Crohn's, and I was diagnosed in July of '09. I went back and forth trying to get on the diet, and then finally I committed and was faithful for a month and a half before I fell off the wagon around Christmas. I am on Remicade and Methotrexate. The Remicade was every 8 weeks, but I started to come down with a serious flare much earlier than my scheduled 8 week infusion just this past month. I went to the intro diet, and actually I went to just liquids for a while to try and help with the flare and it did nothing. I finally was able to get my Remicade infusion 3 weeks early and, thankfully, it has calmed my flare.

>

> For now, it's obvious that it's the Remicade that has helped me. Knowing this, how will I know if the diet is working for me? I know everyone is different, but so many people I've read about say that if they start a flare, they just go back to the intro and things get better. That didn't help me at all. I was getting worse.

>

> I guess I'm wondering if I'm a case that can't be helped by the SCD. I hope that's not the case, but in all honesty, how long should I really give the diet a shot to determine if it is working? The book says a month, but I've read other people that say give it 6 months. For those of you with IBD, what's your experience?

>

> I know the diet doesn't work for everyone. I don't know if it will work for me. I wonder if I'm just trying to follow it so that I feel like I have some control over my disease. Can I get some feedback from people with IBD? Do you think that SCD only works for those people with mild IBD?

>

> Thanks for listening,

>

> Amber

>

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[Guest guest]

Thanks, . Hopefully I can offer reassurance to others some day too!

>

>

> Everyone needs reassurance sometimes, especially me! It's hardest when you're

in a bad situation such as another flare ect.

>

> -

> UC - 1+ years

> SCD - 7 months 100% strict and 4 months restricted diet.

> Asacol - 5 pills a day

>

>